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08-05-2012, 06:33 PM   #91
Naturelover
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JS,
Has your daughter been running any low grade fevers? Is the area hot to touch?

I had a picc line that had to be removed due to cellulitist and two blood clots. Ultra sound is what the doc's used to find my blood clots; not x-rays etc. I was only having a low grade fever at night. By low grade, I mean low grade. I was fatigued as well. I had a lot of pain in my biscep where the blood clots were.

I had IV antibiotics for the cellulitis. My arm was inflammed, hot to the touch and red. Very painful as well. I had green pus coming out where the picc line was inserted into my arm.

Did the doc's say anything about cellulitis? Google it. It can't hurt.

I'm sorry your little one has to go through so much. I hope she feels better soon. Keep us posted on how she's doing.

Blessings and prayers coming your way, Naturelover
08-05-2012, 07:21 PM   #92
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Crohnsinct,

I home school one child now. Was three, then two. My middle child has scattered development as well as learning issues. When we first started homeschooling he had significant health issues. His G-Tube was removed when he was 15 or 16 years old. Being home schooled helped him be healthier and heal faster when he was sick. I have significant medical issues, ADD and find home schooling to be the best thing for our family. I have graduated my middle son and he is now being successful in college. He is not doing a full class schedule yet, but that's ok. His goal is to do a full time college schedule by next fall. My 14 year old daughter, tenth grade, is taking classes at both a co-op and the local college this fall. I had never put her in a co-op until last year. My son only took one co-op class as a senior in high school.

Sooo, even an ADD, chronicall ill, mom can successfully home school. If the home school bug ever bites you, feel free to contact me for help and advice. We all need each other for support. I didn't have any support when I first started out home schooling. When I finally did have support, it was wonderful!

Enough rambling for now. Blessings! I hope all is well with your family.
08-05-2012, 07:30 PM   #93
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JS,
Has your daughter been running any low grade fevers? Is the area hot to touch?

I had a picc line that had to be removed due to cellulitist and two blood clots. Ultra sound is what the doc's used to find my blood clots; not x-rays etc. I was only having a low grade fever at night. By low grade, I mean low grade. I was fatigued as well. I had a lot of pain in my biscep where the blood clots were.

I had IV antibiotics for the cellulitis. My arm was inflammed, hot to the touch and red. Very painful as well. I had green pus coming out where the picc line was inserted into my arm.

Did the doc's say anything about cellulitis? Google it. It can't hurt.

I'm sorry your little one has to go through so much. I hope she feels better soon. Keep us posted on how she's doing.

Blessings and prayers coming your way, Naturelover
Naturelove,
Thanks SO much for this info, she's been "tired" but she's so tiny and weak- I've not noticed any fevers on that area, I'll check her temp tho. WOW, sounds like you had a go! They did a doppler scan when we were there, but w/o knowing where the line was placed (had it pulled 2 1/2 weeks ago) they were in the dark. I know I should have just made the drive, I will if things go that way again. The Hematologist did mention cellulitis and another type of inflammation w/ the veins also. I will search this info out and educate myself some on it. We should all go to med school btw
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10 yr. old daughter w/ Asperger's diagnosed w/ Crohn's Jan 2012
Azathioprine, Remicade, Prednisone (hopefully not much longer), Lovenox (ends on 7-13-12~hooray!)
tried: Pentaza, Hydrocort, Flagyl, Mesalamine, Anaspaz, picc line w/ TPN (formed blood clot 2 weeks after picc line was placed)

I think she's headed into REMISSION~ Praise God

June 2014: 1 year medication free! Thank You God!
08-05-2012, 08:58 PM   #94
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My middle son has high functioning aspirer's. You can't even tell he has it unless you know him like we do. Homeschooling made all the difference in the world being able to teach life skills etc.

Look for the little red bump on her arm or where ever she had her picc line. My was in my left bicep and the bump has now gone down, but there is still a red spot where the picc line was. My picc line was removed May 22, 2012. I had an implanted port installed on my right chest just above the breast and into the juggler vein. Love it! So much easier to deal with. Looking forward to starting my IV tonight.

Also, you mentioned she is/was on Lovenox. Is she still on it? The Lovenox stops the platelets from forming any further blood clot and Warfarin/Coumadin thins the blood. There are also other blood thinners, but these two are the most common. Warfarin is the generic for Coumadin.

It is not uncommon to have pain for two to three months in the area of a blood clot even after the blood clot area looks "healed". Warming the painful area helps diminish the pain. Swelling would be abnormal if she was already treated for ten days with Lovenox and then is either currently on or has finished a course of blood thinners for three months. The time and dosage might not be the same for the pediatric patient as the adult. But, you get the idea. The only reason to remain on a blood thinner for life is if you have a blood condition in which your blood clots easily.

Something to keep in mind down the road for when she is older. My GYN recently told me that I could not take hormone therapy because I had had blood clots. Even though the clots were due to the picc line, she still said absolutely not! It is way too dangerous! I have some gyn issues with bleeding that would be helped with hormone therapy, but because of the blood clot history, I cannot have the hormone therapy.

Below are links to Cellulitis websites:

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001858/

http://www.umm.edu/altmed/articles/c...#ixzz1vxRbns3M

http://www.nlm.nih.gov/medlineplus/e...pages/2379.htm


Was this the term the doc tossed at you?

Superficial Thrombophlebitis

http://www.intelihealth.com/IH/ihtIH...339/10967.html


These links are for your info.

I never had any chills with my cellulitis.

Feel free to PM me and I can email you articles that I have in files on my computer.

Blessings,
Glo
08-05-2012, 09:09 PM   #95
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Thank you for sharing a pic of your daughter. She's adorable.

My son was and still is very thin. He had to have additional supplements during growth spurts. It took years for me to figure this out. When he was going through a growth spurt, we had to give him additional Pedisure. We used Boost when he was older. During a growth spurt, you could see the veins on his face. It took me years to figure it out. Once we did, it was like we were on auto pilot as soon as we saw the veins on his face and automatically added extra supplements. He is now 6' 2". He still uses the Boost to this day because he gets bouts of low blood sugar levels and his system still doesn't seem to be absorbing all the nutrients from food. He has no diagnosis to date. Just a very long list of symptoms.

Anything I can do to be supportive to you, let me know.

Blessings,
Glo
08-05-2012, 10:42 PM   #96
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Vasculitis may be a term your doc tossed around. I was trying to remember the word and just couldn't. Then I found it on the forum.

http://www.crohnsforum.com/wiki/Vasculitis
08-06-2012, 09:05 AM   #97
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Vasculitis may be a term your doc tossed around. I was trying to remember the word and just couldn't. Then I found it on the forum.

http://www.crohnsforum.com/wiki/Vasculitis
That was it! Thanks, I was racking my brain trying to remember!
08-06-2012, 12:32 PM   #98
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You're welcome. With all the medical termanology we have to remember, I think we've all gone batty.

My IBS pain is awful today. I see my pcp today. Hope I can drive okay. Don't you hate trying to remember everything you have to take with you to the docs?

Let us know how things turn out.

Praying for you and your family, NL
08-06-2012, 07:00 PM   #99
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You're welcome. With all the medical termanology we have to remember, I think we've all gone batty.

My IBS pain is awful today. I see my pcp today. Hope I can drive okay. Don't you hate trying to remember everything you have to take with you to the docs?

Let us know how things turn out.

Praying for you and your family, NL
Praying for you NL, hope all goes well at the drs!
08-06-2012, 10:27 PM   #100
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Thanks for the prayers JS. I really appreciate them.

I thought I'd share a bit about my family and me.

IBS still acting up. Still bloated. Still doing lots of large, semi-firm stool even though I've been on Miralax and doing small loose tiny stools for over a month now. Doc said the blood test for Celiac came back neg. Doesn't mean I don't have it. Doc said a colon biopsy would be the final test for it. She is checking for some food allergies via blood tests, but there is a bunch more food I think she will have to check. I think I will visit the dietitian again to figure out what foods to test for allergies. I'm also going to make a list of the foods I avoid eating and why. Vitamin C chew-ables cause my stomach to burn like crazy and gives me GERD. I also avoid anything corn like the plaque. Got off of all high fructose syrup etc... What a difference it makes. I now have an appetite for proper foods. People don't realize that high fructose corn syrup causes you to feel real hungry and crave sweets and high calorie foods. I don't drink any soda. It's full of high fructose corn syrup. I lost a bit of weight and was then within normal weight limits for my age.

We have switched to cooking more natural foods and avoiding the processed ones. I can't let hubby go grocery shopping because he comes home with lots of processed foods like chicken pot pies, fried chicken strips, frozen red potatoes with seasoning (Yuck! They make me sick!) I also can't eat hamburger hardly at all. Just doesn't digest. My daughter is an awesome cook and I can eat her chicken pot pie with no problem. All natural ingredients.

The picture of my family on the couch was taken this past March. See how thin I am? (I have glasses) Since starting my IV hydration therapy I have been able to gain weight. The other picture is from last week at a family camp. Check out the website www.joniandfriends.org Because of your daughter, your family is eligible to attend the camp next summer. The camps are all over the U.S. as well as International. I had so much fun last week. I don't think I've smiled so long or laughed so much in ages. I haven't seen my daughter so happy in over seven months. The guy in the wheelchair is the camp doc. He is amazing. The girl in the red/dark pink shirt is an RN and was assigned to be my daughter's STM (Short Term Missionary). The other gal was my STM. She was to help me with whatever I needed and to assist me walking when my family wasn't around.

The boy in the middle on the couch is my oldest son. He is in the Air Force.

The thin boy with glasses in both pictures is my son with GI issues etc... He had an NG-tube at four months of age, J-Tube at two years of age and then a year later we switched to the G-tube. Eventually he ate orally and did his supplements as I had previously mentioned.

My daughter was having severe tail bone pain this past January. We were told once again that she had a bruised tail bone. Poor child couldn't sit on her bottom much less barely walk. She had been having intermittent pain since she was about eight or nine years old. She went through a growth spurt in Jan. That's why I think her pain got worse. She then spent the night and next day in the ER on Feb. 13th & 14th due to a ruptured, blood filled, ovarian cyst. They gave her all sorts of pain meds before they finally gave her morphine. She continued to have major pain and was barely able to walk. Sitting on her bottom was out of the question. Both of her hips hurt so much from laying on them. She was diagnosed with a hooked coccyx and coccyxiodinia and sent to PT. Months went by and she was still having coccyx pain as well as severe pelvic pain and more sore spots had developed on her spine. The GYN puts folks on birth control pills for ruptured cysts as well as very heavy periods. Both of which she has. Finally, the GYN did exploratory surgery because the birth control pills weren't working and the poor girl was having 12 day long heavy periods as well as still having severe, debilitating, pelvic pain and coccyx pain. I had read up on adult coccyx pain and discovered it could be caused by constipation. I took my daughter, Melissa, to the GI doc. Next, the gyn decided to do exploratory surgery since nothing was improving for Melissa but getting worse. The gyn doc found two para-tubal cysts which could have cut off circulation to her ovary had they been allowed to remain and continue to grow. They also found another cyst on her ovary as well as an adhesion that had one end attached to the colon and the other end to the pelvic wall. The gyn doc cut off the adhesion (some sort of membrane) from both the colon and the pelvic wall, then cauterized them. She said that the colon dropped a long way. The doc also found that Melissa's colon was more than twice the size it's supposed to be. Back in May, blood work indicated inflammation of the gut. Melissa has severe constipation and takes 4 Senokot and 1 Amitiza in the morn; 3 Ducolax Laxatives and 1 Amitiza at night and still struggles with doing a BM. She was on Myralax, 3 1/2 capfuls daily, but eventually we had to stop it because it wasn't helping and her bottom was getting sore and raw like mine. We both used/use Extra Strength Cortisone Cream to attempt to heal up the bottom.

I'm sure you can figure out who hubby is.

I hope I didn't bore you. That would be terrible.

Have a wonderful week!

I can't wait to hear how Em is doing.

By the way, how is Em's sister handling all this. It can be hard on other siblings when one sibling needs so much attention and care.

Prayers, NL
Attached Images
File Type: jpg BFamily Photo.JPG (27.3 KB, 80 views)
File Type: jpg Nurse & Friends 2.JPG (26.8 KB, 80 views)

Last edited by Naturelover; 08-06-2012 at 11:39 PM. Reason: Attachments vanished into the internet black hole.
08-07-2012, 08:23 AM   #101
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NL, sounds like you and your family have been and are continuing to deal w/ a lot! We will pray for you all and hope you can find peace for everyone! You sound like such a strong woman going thru all that you do plus caring for your family and their needs
Em is still having pain/swelling but I can tell her spirits are up. She's being a brat, I say that w/ a smile on my face b/c she's not felt well enough to be bratty in a long time
Her little sis has her moments, she's more prone to feel left out or less loved anyway-I think some people are just born that way But I do make an extra effort to give her even more love and support. We have lots of people who have taken her for weeks this past summer. She's had more fun this summer than I've had in years!
Next week Em sees the Hematologist and her GI, I told her I wanted her up to 55 lbs. by her next appoitment-she came to me yesterday and told me she weighs 55 lbs! Happy Dance time! As long as she keeps it by next Monday we'll be golden!
08-07-2012, 02:36 PM   #102
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Glad to hear Em is feeling more "Spirited".

I'll pray she keeps the weight on.

I lost 4 lbs by last night. I'm still having major cramping and am now doing hard BM's. Does it ever end? I'm not as bloated. I guess that's the silver linning to the cloud.

Melissa saw the gyn for a surgical follow up today. She was shocked at the meds Melissa is on just to try to do a bm. She ordered an x-ray to look for constipation. There are some very dark spots, good size, in the colon area. I'm not sure they are supposed to be there. I just wish the pediatrician or GI would return my call.

I dare say lil sis is having more fun this summer than all of us put together.

I'm sure next week can't come soon enough.

Keeping you in prayer, NL
08-07-2012, 05:47 PM   #103
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I can't stand that anyone has this horrible disease; especially kids. It really isn't fair for little guys to lose so much their childhood to this disease. Bless you and I pray for remission for your daughter and all fellow crohnies
08-08-2012, 08:23 AM   #104
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I can't stand that anyone has this horrible disease; especially kids. It really isn't fair for little guys to lose so much their childhood to this disease. Bless you and I pray for remission for your daughter and all fellow crohnies
I agree, it's a terrible disease that steals so much from everyone. Yesterday she had a bad day- 5 visits to the bathroom in 2 hours, plus bleeding, pain, and the lining of her intestine was coming off again
Her GI bumped her back to 20mg Prednisone, we were down to 10mg for 3 days, and she's back to chicken, turkey, and potato diet (at least she gets to eat). Hoping to stop this before it gets out of control again!
Thanks for the prayers~ God Bless
08-08-2012, 08:57 AM   #105
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Sorry to hear she is having another bad day! Hope the increased Pred will do the trick and she gets over this bump in the road quickly!
08-08-2012, 09:17 AM   #106
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Sorry to hear things are going the other direction for Em again.

What do you mean by the lining of her intestine was coming off?

Blessings and prayers coming your way, NL
08-08-2012, 09:28 AM   #107
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Sorry to hear the down turn.

See I'm not the only one wondering about the lining?
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
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dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
08-08-2012, 11:52 AM   #108
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Please excuse my description: if you take a glass of water and drop crisco/lard in it, that's what I was told is the intestinal lining. Looks like a blob, somewhat formed, but a white colored blob-unless there's bleeding of course. Hope I didn't ruin crisco for anyone
08-08-2012, 12:26 PM   #109
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Naw, you didn't ruin crisco for me.

But, I did ruin my sons lunch. Ha, ha, ha. I had a bite to eat for lunch and then my IBS started acting up and the stomach acid started acting up and I felt nauseous yada, yada, yada. So I was grabbing my tummy and saying, "ooo my tummy's acting up from lunch, I just wanna barf. Tummy hurt. Barf." He's way too squimish!
08-14-2012, 09:43 AM   #110
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Update: Em went to the hematologist yesterday, he said she doesn't have to do the lovenox shots anymore
Later that day we saw her GI and he felt that this little set back is just that a little set back. He had her do her Remicade treatment while we were there so we wouldn't have to drive back. He also said she may have to switch from Remicade to Humira because she tested positive for the antibodies that reject the mice protein that is in Remicade. Humira has a human protein and he feels if we have to switch that he body would accept that easier. I found that very interesting, this is her 6 dose of Remicade and she's never showed any change while on it. I need to do more research on Humira- off to the books for me!
I hope you all have a wonderful day
08-14-2012, 11:00 AM   #111
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Your little girl has been through a lot. So have you. I ache for everyone in your family. Going through this must be so traumatic. It is truly life-altering for the entire family.

I am rather new to the board but not to Crohn's. I have a sister with very severe short bowel who is on long term TPN with a port. At various times she has had PICC and central lines as well. Our son was dxd with CD at 10 and we did EN via NG tube twice. He also has significant sensory issues. I thought he was never going to stop smelling his food before he ate it and he only started eating foods that were mixed together about the time he turned 13. It took quite some time for my son to be diagnosed and he has done Humira shots.

I read through all your posts so far and have some questions and thoughts to share.

1. I suggest that if there is any way for you to go for a 2nd opinion to Mayo Rochester or to CHOP in Philadelphia that you do so. Both those places will help you from their end make arrangements to come (or so I have heard about CHOP and know from personal experience about Mayo).

2. I understand the choice of TPN over EN but wonder about the possibility of at least trying an NG tube to do feedings. And it could be attempted at the same time she is doing TPN since that has clearly not been enough on it's own or in combo with Remicade (or so it seemed from your posts). In Europe/Canada/Japan the preferred approach is EN over TPN because the research has supported this approach as the most likely to bring about remission.

3. There are also a number of ways to try to make oral EN supplementation or exclusive EN more palatable for her that may work. You don't know if you don't try. I would guess that there are things you would never have thought she will eat that she does and other things that she rejects you were sure she would eat. May be the same with EN. Or at least some flavors/kinds.

4. They need to be closely monitoring her vitamin levels, especially vit. A and Vit D to ensure she does not sustain damage to her vision and bones that may be irreversible. If they are not checking these (and they really should be checking her other vitamin levels too) then you need to get on them about this.

5. There is absolutely NO reason for her TPN to have been inadequate for that period of time. As I understand it, the home health agency providing her TPN should be monitoring her weight and drawing labs on a weekly basis and requesting adjustments in her TPN formulation accordingly. If the agency you are working with does not have a dietician and pharmacist dedicated to handling TPN patients then I strongly suggest you look for one that offers this service. You won't find them operating out of claremont. Any agency with that level of care (only one may be a Coram office) is going to be in Tulsa or even OK City. Your health insurance may or may not contract with them but if they don't I believe it would probably be worth appealing any denial in order to get services from a highly qualified service.

6. If they anticipate that she will continue to require TPN either continuously or intermittently for much longer then you may want to discuss placement of a port with the GI. Especially in light of the blood clot, this may be an appropriate alternative. PICC lines that are placed to allow TPN carry many of the same risks as a port because they must be advanced into the Vena Cava. They are normally replaced every 4 to 6 weeks, a procedure that normally requires sedation and placement by radiology. A port is placed by a surgeon once and can remain in place 5 to 7 years. There are other considerations for each one that you will have to weigh but I would start the discussion now so you have time to think it over, especially if she develops another clot.

7. Why didn't they start either 6-MP or Methotrexate at the same time as Remicade? In a child this sick, frankly, if you are going to do Remicade I would think you want to give her the best possible shot at making it work as long as possible. That means giving her both kinds of meds if you are going to use the research as a guide.

8. Humira shots hurt. They are given every other week in the belly or thighs. I suspect that your daughter is going to have trouble cooperating with their administration and you will be the one who has to give them to her. I suggest that you want to maximize the time she stays on Remicade if it is working for her. If it is not working for her then perhaps Cimzia would be a better choice as it is given as two shots once a month. Same number of shots but you only have to do it once a month. I have heard that Cimzia is less painful but do not know from personal experience.

9. If there is any way to find your daughter a therapist who has experience helping children who have experienced significant abuse (not she that she has been abused in a traditional sense) I would do that and start taking her to see that person now. Experiencing this kind of medical trauma and physical illness has long term psychological/emotional effects.

10. You need a new pediatrician frankly. The advice about ignoring the swelling was, well, malpractice. That doctor has little to no experience with kids like yours and you need one who has the experience to help you. This stuff is probably not going to go away any time soon. We have a terrific pediatrician and he is essential to making our long distance partnership with our ped GI work well. He is part of a group that are all very good although some are better than others. We drive 30 minutes to get to his office. His group is affiliated with the tertiary care center in our city. You are 30 minutes from Tulsa and that's where you need to look for a peds who has the experience you need. She may need emergency admission in Tulsa and you need a pediatrician who has admitting privileges there, among other things.

Many hugs. You must keep in mind that this is going to be a long haul and care for yourself and the rest of your family too. It is a tough balancing act and I hope your spouse is there every step of the way, going to doctor's appointments and helping as much as possble.
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Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.
08-14-2012, 03:36 PM   #112
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Here's a link to the Coram OK City office. You may already be getting her TPN from them in which case I am very surprised that her care was compromised as they have a reputation for excellence in the delivery of infusion nutrition services. The problem may have been at the doctor's end of things.

Anyway, in case you need it, here's the link.

http://www.coramhc.com/Map/OK_OklahomaCity.aspx
08-15-2012, 01:18 AM   #113
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I use Coram here in Maryland and I love my RN. I get all my IV hydration supplies from them as well. I "fired" the last three companies.
08-26-2012, 09:04 AM   #114
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JS,

How are you and EM? Haven't heard any updates, just wondering.....

Thinking about you and sending prayers your way. Naturelover aka Glo Worm

P.S. Don't let my new avatar confuse you. I'm still Naturelover. This particular avatar is a Glo Worm (One of my nicknames. Ha, ha.) A friend sent me this new Glo Worm avatar in an email. Too funny!
08-27-2012, 08:06 AM   #115
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Em is almost at 60 lbs, she's been doing wonderful! I've been down w/ terrible allergies tho. I'm feeling better and ready for another wonderful week. I hope all of you and your families are doing well also. I will try to get on later and check the threads to see how everyone is.
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