Thank you for your comments. I'm glad there are still people listening to me complain!
On the Nathan front, he has been whiney, fussy and tired lately so I hope he is not getting sick. On Monday he had a slight fever and asked if he could take a nap at 11:00AM! Yesterday he did not have a fever, but was still fussing about everything. They even said he was fussy at school and he took a nap there which is unusual for him. His eyes look very very tired all the time and so of course he is not eating well. Yesterday at school he was casted for orthotics.
I tried to fill the Zinc prescription at Walgreens, but they said they only have that dose in injectable form. I am not giving him shots everyday so now we are on the hunt for someone that can fill the prescription. We already pay $50 month for the biotin bc we had to go through a special compounding pharmacy that does not take insurance so hopefully we won't have to do that again. Mark is on assignment for the zinc and the dexa scan.
Now that Nathan is 3, he obviously should be potty trained. We did try for a while, but he had no interest-recently we haven't given it much effort. Honestly after the energy we expend for his eating, hair, appointments, physical development, weight gain and various other worries, we have very little reserve energy left for potty training. So occasionally we tell him he should be going on the potty, but that is about it. We do need to get motivated, especially since Baby Oliver, Bennett, Charlie, Caleb or Benjamin is coming soon! (Did I mention that Nathan wants to name him Nathan and to differentiate he says we will call him "baby Nathan")
10.22.2008
10.18.2008
GI appt
We had our GI appt on Friday with Dr. Boyle. He is great, a real proactive doctor who is ready to do things rather than "defer" to the other specialists on team Nathan. He prescribed zinc for Nathan due to the level in two series of bloodwork from endocronology. I was excited because I looked up zinc deficiency which discussed symptoms of poor appetite, low weight gain, skin changes. It actually said it could mimic connective tissue disordrs. I thought maybe that would resolve all of Nathan's issues. You know, he doesn't have a rare genetic disorder, he needs more zinc! It turns out, it is not that low. The range is 60 to something and Nathan's is 56. Oh well.
Dr. Boyle prescribed zinc for us. He also said he does not think that Nathan's growth hormone deficiency can be attributed to nutrition as endocronology seems to think. He took Nathan off Prevacid and prescribed Axid. He would like to get him off of these types of medication because they have been shown to cause osteoporosis in later years. I am nervous that he will start throwing up again at mealtime. We have not switched him yet, but will tomorrow. He also will schedule the dexa scan now that Nathan is 3. He would like to do an endoscopy to rule out food allergies but it is an invasive test that everyone has been putting off. We will return to him in three months and depending on how Nathan does coming off the Prevacid, he will do the endoscopy at that time. He is also checking on the status of the calorie count since we haven't heard from CHOP about that.
I think there was something else, but I can't remember right now. Friday seems like a long time ago.
Oh yes, not GI related. The PT at Nathan's school would like to have Nathan fitted for Orthotics-they would go in his shoes and come up past his ankles. She thinks it would help him so we will see. I asked if it inhibits the strengthening of his muscles, but she said it will not because it is a flexible material. I don't quite understand, but I am not a PT. He is special needs, so emotionally I'm fine with him having orthotics to further seal the deal.
Dr. Boyle prescribed zinc for us. He also said he does not think that Nathan's growth hormone deficiency can be attributed to nutrition as endocronology seems to think. He took Nathan off Prevacid and prescribed Axid. He would like to get him off of these types of medication because they have been shown to cause osteoporosis in later years. I am nervous that he will start throwing up again at mealtime. We have not switched him yet, but will tomorrow. He also will schedule the dexa scan now that Nathan is 3. He would like to do an endoscopy to rule out food allergies but it is an invasive test that everyone has been putting off. We will return to him in three months and depending on how Nathan does coming off the Prevacid, he will do the endoscopy at that time. He is also checking on the status of the calorie count since we haven't heard from CHOP about that.
I think there was something else, but I can't remember right now. Friday seems like a long time ago.
Oh yes, not GI related. The PT at Nathan's school would like to have Nathan fitted for Orthotics-they would go in his shoes and come up past his ankles. She thinks it would help him so we will see. I asked if it inhibits the strengthening of his muscles, but she said it will not because it is a flexible material. I don't quite understand, but I am not a PT. He is special needs, so emotionally I'm fine with him having orthotics to further seal the deal.
10.13.2008
hair, 3 year check and PT
Well Nathan's hair appears to be thinning even more. At first the biotin and conditioning spray seemed to be helping, but now I see more scalp then ever and not just on the back of his head. I am beyond depressed about it. As if his appearance wasn't different enough now we have this which is a completely separate condition. It would be fine if we had hope of it getting better, but everything I read about Pili Torti says that there is no affective treatment for it. It is all I can think about these days. I have asked Mee Maw Allison to make him a silk or satin pillow to minimize the breakage and hair loss, but of course this is just a bandaid and not a complete solution.
Nathan had his 3 year check on Friday. He weighed 23 pounds and was 35 inches in length (laying down, not standing up). The appt was fine until the end. Dr. Lockman was very concerned about the pregnancy and talking with genetics about what to expect etc. I left wondering why in the world we are doing having another baby. At the end of the appt, Dr. Lockman brought in one of the new doctors to show her his "special patient" (his exact words). He introduced Nathan, described his diagnosis and had her feel the back of his head for the wormian bones and look at his club fingers. I felt like we were a freak show and wanted to cry on the spot.
Nathan was assigned a physicall therapist at his school. I talked to her on the telephone and she seems very nice. She did lots of research on Nathan's condition which is great, but as a result she is afraid of "brittle bones" which is a symptom of Pycno. She is fearful of the liability of it and requested a note from the dr stating that there are no restrictions. I copied tons and tons of Nathan's paperwork-letters from doctors, x-ray reports etc so that she can be informed of his condition. The copying all of the paperwork did not help with my depression they are all reminders of what is wrong with Nathan...this bone is short, malformed bones etc. Especially upsetting is the one letter from an expert in Calif who ends his letter to CHOP with "Thanks for allowing me to participate in this unusual case."
So yes, I have been very depressed, wanting to sleep all the time, not being productive etc. Same old thing, my family is forever changed by this and will forever look different. I can't believe this is our reality. Feels like everyone around me has matching kids and when I go to the mall or somewhere else, there are 3 year old boys everywhere that look nothing like Nathan. Nathan will always look different and pretty soon he will have to deal with it himself. Will he get married, will he have a normal life...and all those feelings I have always had. And the fact that we are dealing with such a rare diagnosis. Then I started worrying that this child will have it too. They don't really know for sure. Some of there paperwork says 50/50 chance which is not so good.
On friday is Nathan's GI appt when we will most likely get the referral for the Dexa scan which will determine if he indeed has brittle bones. I am hoping for a miracle! If it confirms brittle bones, it would further solidify the dx of Pycno, if not it would further "baffle" the professionals. If Nathan continues in his tradition, the miracle may happen!
To those of you who are still reading this, I really appreciate it. Even if you see me and talk to me every day, it helps if I know people understand what is going on. That way I can hang out and talk about fun things rather than filling you in on Nathan's latest weight check or why his hair is thinning. So thank you and please keep reading when you have time.
Nathan had his 3 year check on Friday. He weighed 23 pounds and was 35 inches in length (laying down, not standing up). The appt was fine until the end. Dr. Lockman was very concerned about the pregnancy and talking with genetics about what to expect etc. I left wondering why in the world we are doing having another baby. At the end of the appt, Dr. Lockman brought in one of the new doctors to show her his "special patient" (his exact words). He introduced Nathan, described his diagnosis and had her feel the back of his head for the wormian bones and look at his club fingers. I felt like we were a freak show and wanted to cry on the spot.
Nathan was assigned a physicall therapist at his school. I talked to her on the telephone and she seems very nice. She did lots of research on Nathan's condition which is great, but as a result she is afraid of "brittle bones" which is a symptom of Pycno. She is fearful of the liability of it and requested a note from the dr stating that there are no restrictions. I copied tons and tons of Nathan's paperwork-letters from doctors, x-ray reports etc so that she can be informed of his condition. The copying all of the paperwork did not help with my depression they are all reminders of what is wrong with Nathan...this bone is short, malformed bones etc. Especially upsetting is the one letter from an expert in Calif who ends his letter to CHOP with "Thanks for allowing me to participate in this unusual case."
So yes, I have been very depressed, wanting to sleep all the time, not being productive etc. Same old thing, my family is forever changed by this and will forever look different. I can't believe this is our reality. Feels like everyone around me has matching kids and when I go to the mall or somewhere else, there are 3 year old boys everywhere that look nothing like Nathan. Nathan will always look different and pretty soon he will have to deal with it himself. Will he get married, will he have a normal life...and all those feelings I have always had. And the fact that we are dealing with such a rare diagnosis. Then I started worrying that this child will have it too. They don't really know for sure. Some of there paperwork says 50/50 chance which is not so good.
On friday is Nathan's GI appt when we will most likely get the referral for the Dexa scan which will determine if he indeed has brittle bones. I am hoping for a miracle! If it confirms brittle bones, it would further solidify the dx of Pycno, if not it would further "baffle" the professionals. If Nathan continues in his tradition, the miracle may happen!
To those of you who are still reading this, I really appreciate it. Even if you see me and talk to me every day, it helps if I know people understand what is going on. That way I can hang out and talk about fun things rather than filling you in on Nathan's latest weight check or why his hair is thinning. So thank you and please keep reading when you have time.
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